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India Alliance of Patient Groups QA

January 14, 2016

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#IAPGqa

The India Alliance of Patient Groups and the Partnership to Fight Chronic Disease are proud to co-host an online Question and Answer session that will examine key issues in healthcare in India from the patient perspective. Joining us will be a panel of experts from The International Alliance of Patients Organizations and the Partnership to Fight Chronic Disease. Submit your questions and join the discussion Jan 14, 10 AM New York, 3 PM London, 8:30 PM New Delhi.

Kawaldip
Sehmi

CEO, International Alliance of Patients Organizations

Coming from a legal and public health background, Kawaldip has been championing human rights based approaches to health for a decade now. Having first developed insight in one of the longest and most successful health and legislative change campaigns -WHO Framework Convention on Tobacco Control - he moved into leading research, policy, law and practice in child rights before joining IAPO to promote patients' rights that are backed by strong legal and institutional frameworks.

Kevin
Walker

Executive Director, Partnership to Fight Chronic Disease

As one of the original founders of the Partnership to Fight Chronic Disease, Mr. Walker today serves as its Executive Director where he focuses his efforts on educating governments, NGOs and other stakeholders, around the world, about the growing social and economic impact of chronic, non- communicable disease and explores for innovative solutions to address these growing problems.

For more than 25 years, Mr. Walker has focused on public affairs, public health policy and politics at a state, federal and international level. Mr. Walker has also served on the senior staff of several elected officials including Leadership of the United States Congress. He is also a founding partner of the Washington DC-based Penn Quarter Partners, an international public affairs consultancy.

Dr. Ratna
Devi

Founding Chair, Indian Alliance of Patient Groups

A medical doctor, public health and management professional, Dr. Ratna Devi brings more than 20 years of experience working to improve health outcomes in India. Dr. Devi is CEO and Co-founder of DakshamA Health and Education, an organization that is dedicated to working for access to health, patient education and advocacy. She is the Founding Chair of the Indian Alliance of Patient Groups.

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Our time for the live discussion has now expired but please continue to check our Twitter and Facebook pages for additional questions, answers or comments. Does Dr. Devi have any closing remarks?

Thank you to our panelists and to all those who participated in today’s forum. By working together we can advance the rights of patients to quality health care in India.

Since the private sector plays a major role in delivering healthcare in India what is being done to promote public-private partnerships with health industries and others to improve health access in India?

Public private partnerships remain a core reliance of Indian society. So much so that the government oftentimes builds the prospect of these partnerships coming together into their own plans for the country.

Public Private Partnerships or PPPs as they are called are the backbone of healthcare delivery in India. Several National and State level programs are rolled out through private partners especially for hospitals and diagnostic services. Medical Education is also through partnerships in many states.

This is a weak area. There are strong legislations and several National guidelines but the implementation is very poor. Patients do not have a neutral body they can report to and the mechanisms for redressal are often very slow.

With so many NGOs operational in India, consensus around these roles and priorities will be difficult. However progress has been made. During the past two years more than 120 stakeholders including government have come together to create an evidence-based action plan, entitled Sankalp, which can be adopted by the government and the private sector alike. The proposal focuses on three core tracks converging to form this pathway, specifically: Policy and Surveillance; Strengthening of Healthcare Systems; and Healthcare Financing.

Why have patient groups in India not been able to exert more pressure on India's very low levels of public spending on health?

To date there has been a lack of transparency on health financing and on measuring outcomes. We aim to change that by speaking out on these issues and by highlighting outcomes through patient satisfaction surveys, evaluation of hospital and healthcare provider services, and hospital grading systems to name a few.

Will the alliance encourage the importance of health literacy, adherence and treatment outcomes?

We aim to do this in local languages to make it easier for people to read and understand. We have started work with some of our larger and stronger member organizations through their individual members.

It won’t happen overnight. The alliance and its members can serve as an important vehicle to develop an informational infrastructure and disseminate information on a broader scale whether it be online, through social media or in person.

In what ways can the alliance improve the current healthcare system in India?

By providing a platform for the voice of patients we believe that we can drive patient-centric health care reform in India and bring greater accountability and transparency to health policy decision-making. Our goal is to work with the government to create a safer, more accessible health system that will meet the needs of all patients regardless of income or location.

Over 250 IAPO member organizations, as expressed in the Patient-Centred Charter, support the proposition that the only way to achieve sustainable UHC is for patients to participate as partners in the development and delivery of healthcare.

If India has to transform healthcare systems to achieve universal healthcare and healthy outcomes it has to meaningfully engage patients as stewards in their own healthcare and sustainable access for all

What do you see as the key challenges in addressing chronic disease in India?

Chronic diseases account for nearly two thirds of all deaths in India. Key challenges include raising awareness of the risk factors for chronic disease such as lack of exercise, obesity, smoking and other lifestyle issues and promoting necessary behavioral change. Similarly better access to health services and cost effective medicines will play a major role in reducing the burden of chronic disease.

In what way does the International Alliance of Patient Organizations support patient advocacy in India and elsewhere?

IAPO is a network of over 200 patient organizations from around the world. We help build the advocacy capacity of local and national organizations primarily by sharing experiences and best practices for patient advocacy. We also hold regional workshops around the globe including a workshop in India in 2014 where leading patient advocates from different countries and regions met with advocates from India to discuss issues around access to patient centred care.

A patient network allow patients to become better organized so that they can share disease state information and advocate for access to treatment. Collectively, a patient network allows individual patients or individual groups be greater than the sum of their parts

A Patient network is necessary to bring together various organizations working on disease verticals to unite and present a common voice for issues that affect all patients and patient groups. It also helps government and other agencies connect with a common group.

The key area of focus at present is to be recognised by the government and other stakeholders as a representative of patients and their interests. The other top priority is working on access to medicines.

From a patient perspective what are the key issues in healthcare in India today?

India currently faces the dual burden of communicable diseases and chronic, non-communicable diseases (NCDs) such as cardiovascular disease, diabetes and chronic obstructive pulmonary disease. Success in controlling communicable diseases to some extent as well as increase longevity and changes in people’s lifestyle driven by health transitions and economic progress are contributing to the increase in NCDs. The increasing burden of NCDs has had not only obvious health implications but also economic and developmental consequences

The key issues facing patients are: access to quality healthcare, lack of uniform and correct information on diseases, diagnosis and treatment, lack of political commitment for investment in healthcare, rampant commercialization of healthcare making it unaffordable even to people with decent incomes.

We would like to thank Dr. Ratna Devi from the Indian Alliance of Patient Groups, Kevin Walker from the Partnership to Fight Chronic Disease and Kawaldip Sehmi from the International Alliance of Patients’ Organizations for participating as respondents in today’s online question and answer session. Before getting started does Dr. Devi have any opening remarks?

On behalf of the Indian Alliance of Patient Groups (IAPG) I would like to thank Patients and Research for convening this important discussion about patient centred health care in India. In November of 2014, patient groups from India came together to form an alliance to advance the interests of all patients throughout India. This online question and answer is an excellent platform for engaging groups across India in our activities. We are proud members of the International Alliance of Patients’ Organizations and the Partnership to Fight Chronic Disease and we are grateful for their support for our efforts.

As a cross diseases patient alliance, IAPG brings together patients and patient groups from a broad spectrum of diseases to work together for cross cutting areas such as: access to safe and quality medicines and diagnostics, patient safety, financial mechanisms for healthcare and access to information.